All of us receive the same amount of hours in a day. Some of us work the clock and divide up our time into neat slices of pie, while some of us simply eat pie and have no idea what time it is. I have always found interest in watching and asking how people spend their time, especially the vague definition of “FREE TIME.” Isn’t all time free? What we choose to fill it up with defines us. As adults we have schedules to keep for work, appointments and meetings, but all time that is not dictated is absolutely free. Some of us keep to a sleep schedule; some not so much. Some of us work like our hair is on fire; others laugh at people that work “too hard.”
What about all the hours that you are given that are “FREE?” Are you napping? Scrolling through social media? Hiding in the bathroom since it’s the only quiet room in the house? Exercising? Painting? Climbing a mountain? Reading? Cooking? Developing a hobby? The list is infinite and many people advise each other to “MAKE THE MOST OF YOUR FREE TIME!” John Lennon said “Time spent doing things you enjoy is never wasted time.” Also true. For some, time is money, and for others, money is time. There are demands on our time, but more often than not, we put them there. Time also means vastly different things depending on where you are in life. Think for a moment (see that? Time!) about what time means to a child, an adult, and a retiree. Totally different. My retired friends often remind me that “Everyday is Saturday.” I have no idea what that means, but I do hope to reach it someday….or sometime.
In my adult life, I have become awful at doing nothing. I hate the feeling of not having something that needs doing and so sometimes I invent reasons to leave the house. My wife will want to run an errand or two and I always pile on…well, we could also hit the library, I need gas, and we should pick up that stuff at Home Depot. I’m annoying, however, living with MD, I have conditioned myself to do things now that might not be possible in the future. I’m often asked why travel even though it’s difficult, especially by plane. The simple answer is, sometime in the future, as my disease progresses, it might become impossible, so I travel as much as I can while I am able. It’s not a downer to me, it’s simply a fact. These words are also not intended to make you feel like you should be doing something monumental every moment of everyday, nor are they here to make you feel guilty that you should be doing something other than reading this. In fact, I hope you are sitting comfortably right now and are enjoying this time. I believe what I just typed is THE secret. All of us get the same 24-hour chunks, but how much of that chunk do you enjoy? If your answer is: not too much, then perhaps time isn’t the problem. Enjoyment of the time might be the problem. Here’s a short story about a recent time that I did not enjoy, and how I dealt with it.
Last month, returning from Italy, I contracted Covid (yes, I’m vaxxed and boosted). It knocked me down for more than a week and made me furious that I was unable to jet to Washington D.C. in early March for an annual event that I’ve been involved with for 20 years: Lobbying my members of Congress for muscular dystrophy research.
This year more than 130 family, patient, and industry advocates visited D.C. with Parent Project Muscular Dystrophy to ask Congress two things:
- Request $22 million dollars for MD related programs at the Centers for Disease Control and the Department of Defense Congressionally Directed Medical Research Program for MD research. If soldiers can benefit from increased muscle strength and stamina, there will be an impact for those of us living with muscle disease as well.
- Request language in existing law that will ensure the FDA discloses how it incorporates patient experience data in the review of new therapies. In short, the patient voice should not only be heard, but should factor into new therapies and treatments moving forward.
Sounds like two easy asks right? We have all seen and heard Congressional budget numbers get thrown around and they are too big to fathom. How does one wrap any understanding around one trillion of anything? I wonder what one trillion Oreos would look like. Well, a man can dream can’t he?
Anyway, patient advocates like myself have been doing these “asks” annually for more than 20 years to keep muscular dystrophy on the government radar. It doesn’t matter who is in office; we still go, build relationships with Congressional members and their staff, while continuing to raise awareness and funds for MD. I enjoy the time in the Capitol and it is amazing to learn that the country is largely running on men and women in their mid-20’s who do all the research, write things up and “brief” the members of Congress. Time with the staff is well spent in teaching them about the condition and what should be done to advance quality of life. The meetings last 15-30 minutes. Short TIME. However, multiply that by 20+ years. Long TIME. Progress? Sure. Measured against TIME? Progress is too slow if you ask me, but then again, the government has one or two other things to work on at once. Not enough TIME. So we go, and remind them that we are not leaving. OverTIME. haha.
One of my favorite parts of advocacy is watching the younger generation understand how powerful it is to use your voice for positive change. Our “asks” of Congress look like a drop in a bucket compared to what is spent in other areas, but what define us is our consistency and resolve. Congress knows that individuals living with muscular dystrophy are going to keep coming to Capitol Hill in our FREE TIME until we have treatments. Perseverance is just as important as the legislation.
So this year, being unable to travel due to Covid, I met virtually with a bunch of my MD friends while they were in DC and I also got in touch virtually with my own members of Congress. It was not as impactful as being in person, but still an important use of TIME for me. I will continue to grow relationships with members of Congress and travel as long as possible. Indeed time spent doing things you enjoy is never wasted time. In our FREE TIME, we all also have the power to change the world. Do it.
Stay safe, stay awesome, and stay tuned.
Bonus this week: Stay engaged. YOU can let your members of Congress know that this issue warrants their attention and a tiny bit of our tax money. Have 2 minutes of FREE TIME? Join us by raising your voice too. Yes, this is a shameless plug to rally you to my cause. Feel free to comment on your FREE TIME, or causes that you support. I am happy to email Congress over and over just to make sure that they hear us. Keep it civil. (You know who you are out there.) Ok, TIME to sign off. See you next week. Same BAT TIME. Same BAT CHANNEL. Ok, I’m done. (younger readers….google that…it’s a TV Batman thing….before your TIME.)
By going to this FORMATTED letter, you can help change the world. Not a bad thing to say that you did today. THANK YOU.
Patrick moeschen 